低收入和中等收入环境下个人层面健康研究数据的道德共享最佳实践。
Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.
作者信息
Bull Susan, Cheah Phaik Yeong, Denny Spencer, Jao Irene, Marsh Vicki, Merson Laura, Shah More Neena, Nhan Le Nguyen Thanh, Osrin David, Tangseefa Decha, Wassenaar Douglas, Parker Michael
机构信息
University of Oxford, UK
University of Oxford, UK Mahidol University, Bangkok, Thailand.
出版信息
J Empir Res Hum Res Ethics. 2015 Jul;10(3):302-13. doi: 10.1177/1556264615594606.
Abstract
Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders' perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.
摘要
分享临床和公共卫生研究中的个体层面数据，日益被视为高效生物医学研究的一项核心要求。本文讨论了一项系统综述和多地点定性研究的结果，该研究探讨了中低收入环境下关键利益相关者对道德数据共享最佳实践的看法。我们的研究表明，要使数据共享有效且可持续，需要满足多项社会和道德要求。一个有效的数据共享模式将是这样一种模式，即需要就是否能最好地实现科学进步、将伤害风险降至最低、促进公平与互惠以及建立和维持信任做出审慎判断。
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